We just took my “last trip”. It was to New York. Here are our sincere reflections on what could have been a disaster.
Kyle (the patient):
I’m the patient, a 65yr female. I’m still living on my own but I can see I’ll need a lot of help soon enough.I’m … I was.. a very independent woman. It’s been super difficult for me to ask for help but my daughter 34yr has stepped up to the plate to help.We just went on “the last trip”, my first time out of my house for more than a doc appointment or a haircut in 3 years, and I learned clearly about how my symptoms have grown.
I came to an understanding on the trip that I’m just not who I was even just a couple months ago. Symptoms are coming on hot and heavy now but I didn’t see how much help I could use because I’m at home, safe in my wheelchair, recliner or my adjustable bed.
My daughter and I both were surprised that I couldn’t remember what we were going to do each day, sometimes in the next few hours. My hands don’t work well enough to tie my own shoelaces or use zippers and when the zipper on my coat got stuck we had to pull it off over my head. In public. We’re pretty pragmatic — it could have been truly humiliating if I let it. We giggled.
Even though I have eye drops that I use often during the day I would often be able to focus with just one eye — I saw a broadway show with the blurry eye closed. I don’t have much depth perception either.
I am having trouble getting in and out of bed. I don’t always have the strength to lift my legs.It was hard to find bathrooms that were big enough and laid out in a way that I could scoot over from the wheelchair. Once the wheelchair took up so much space I had to climb over it with my daughter’s help. We did the only thing we could do about it. We laughed.
This trip was the first time my daughter saw me with my pants down and the first time she had to help me off a low toilet. It shocked me to lose my privacy and it means we’re at a new level of care.
I wore rubber pants over my depends all the time to give us more time to find a place I could use and those pants gave us a lot more freedom. I kept my water consumption down to 2-3 cups of liquids every day to give us fewer accidents, which is just my pride showing through… and this week I have a painful kidney infection.
I cough at every meal and people who see me get concerned and ask if I’m okay. I thought it was just coughing but the doc showed me with live X-ray video that the coughing is really choking and that I should eat softer foods, chew longer, and keep my head in the right position so I was more likely to get everything down without a problem. That was a hard thing to hear.
I really learned about how gross the life of a caretaker can be when I had an accident at 4a.m. one night. I’ve never asked my daughter to help with problems like that and I hope unrealistically that I won’t need help from anyone in the future. But this was baaaad. So I took an hour and every towel I could get and cleaned it myself, working in every nook and cranny to get it all clean. It was hard work and I can’t imagine the burden of you guys doing that day in and day out.
I’m amazed at caretakers and their abilities to “remain calm and carry on.” Your life is tough and you’re cleaning up messes like the one I had every day. My god, your life isn’t what you thought it would be either.
Know this: I was my mother’s closest family member after her stroke. I wasn’t perfect with her, far from it. One day she just wanted to stand up from her bed and then sit right back down. Then get up again. I was able to help her stand/sit for about 20 minutes then I said, too harshly, “This is giving me a backache. Stop it!” She laid back on the bed and there was a long pause. I felt badly for days. I still feel bad 15 years later when I think about it.
You don’t need to be perfect either. There’s a “new normal” every day and we’re all getting through it as well as we can.We patients are grateful every day for your help with our declining bodies and we know your life now is not what you would ever have expected. Plenty of the help you give is as embarrassing for us as it is exhausting to you.
We are for the most part the same people we used to be in our minds. My voice sounds the same way it always did when I’m thinking, but out loud my voice is halting and slurred. I sometimes dream of walking in the woods and it takes a moment when I wake up to realize I can’t even get out of bed.All of this comes down to 2 words. Thank you.
Claire (34yr old caregiver)
:On a whim my mom and I started brainstorming whether there was anywhere we could travel together where the enjoyment would outweigh the struggle of trying to function outside of her home with all of her assistive devices.
My mom is a seasoned world traveler and has been more or less stuck in her house for going on 3 years due to the pandemic and worsening mobility. For so long we had given up hope of ever traveling together again. We ended up traveling to New York City on Thanksgiving Day and had an awesome 6-day trip.
The airline staff, Uber and bus drivers, hotel, theater, and restaurant workers, and many a stranger who held a door open for us along the way were a huge help. My mom was able to arrange for a motorized scooter rental to be delivered at our hotel, which allowed us to go on walking tours and saved me a lot of back pain. (It was terrifying for her to learn to drive it on the crowded streets of Manhattan, but she was very brave and did a great job!) She got a walker that folds up really well and we figured out how to affix it to the wheelchair and scooter with velcro.
She bought rubber pants that gave her peace of mind if we couldn’t get to an accessible bathroom quickly enough.
There were certainly challenges, and we chose to keep our schedule relatively light, but overall we had a blast and saw so much!
I am SO grateful for these memories with her. We know that soon this won’t be possible. I would add that it was really a gift as a caregiver for me to get to do a few things on my own that were really special to me and weren't good accessible options for her. It was really helpful that I had her blessing to do some stuff on my own in the morning or in the evening without having to feel bad about it.
Made the trip outwest
Article by our neurologist at the university of Florida about PSP
Our caregiver is not a morning person
Reading 'Last Dance At The Savoy'
Sharing our hemp oil experience 
